My husband's surveillance thread

[mercyriver]

I thought I would start a surveillance thread and hope it is going to stay that way permenantly, as surveillance.

My husband had his 4th check up since he finished his 3xBEP.

All blood work was normal, as it has been almost the entire time, the exception being at his diagnosis.

He will have another CT scan next month...that is what I am looking forward to...that is much more reassuring then the bloodwork.

His heart is still doing well since the cathater was removed from his heart.

His rash still is coming and going...he is thinking of going back to the dermatologist again, because what she gave him didn't work well enough.

His dark circles under his eyes are still there...maybe it is just pigminted skin. And he is still very worn out. Always saying "why am I so tierd?". I am starting to think he is just really out of shape now...but he has yet to take up exercising, just running around with the kids wipes him out....poor thing.

But that is all for our part of the world, till next month!

Becki

[Lori]

Hi Becki, great news! So happy for you both.

Lori

[Margaret]

Hi Becki...I agree, sounds like good news. I hate to hear that he is so tired and I assume they have checked his blood levels. Sounds almost like Boyce did when they gave him a blood transfusion. It really made a world of difference for him. I hope he starts feeling like himself again soon and you have done a wonderful job looking after him!!

[Fish]

Glad to hear things are going well.

It can take a while for the body to recover pre-cancer levels of strength and endurance. As long as you see steady improvement, I wouldn't worry too much. Has the doctor ever tested testosterone levels? It might be worth a check.

Best wishes,

Fish

[mercyriver]

Ah yes, the test for testosterone.....if I could convince my husband to ask for this, well I will have actually done something...I am getting better at getting my husband to think it his idea are really his, not mine!!! Evil I know. I'll keep working on it.

And Robert, you all will be the first to know about those lymph nodes next month. The CT is set for August 1st!

And I am hoping for shrunken nodes.

thanks you all

Becki

[Karen]

Ah yes, the test for testosterone.....if I could convince my husband to ask for this, well I will have actually done something...I am getting better at getting my husband to think it his idea are really his, not mine!!! Evil I know. I'll keep working on it.
Becki

Good news Becki, and Fish and I are proud of your methods....

[mercyriver]

Newest results

My husband went July 30th for blood work, all normal, as always.

He did his CT on Aug 1st. They called him to let him know that his lymph nodes did enlarge, but not by much. They said it could be from "inflamation". And if any of you remember us from back in Sept, Oct and Nov of last year, you would know that is what they originally told my husband when they started enlarging before we did chemo.

I don't know how much they enlarged yet, I'll get that information when we see the onc on Wed.

Trying to stay positive, really I am. But when you put on top of that his really strange skin rash, his intestinal problems, his ever increasing fatiuge (again) and the dark circles under his eyes that seem to be getting worse again....I get a really yucky feeling in the pits of my stomach.

I know this question has been asked before, but how quickly does teratoma grow? He did have teratoma in his original tumor.

My husband is absolutly terrified of having the RPLND. In fact he told me yesterday that under no conditions was I allowed to be negative. He said I have a tendency to be negative when talking to the oncologist. All because I address that something could be wrong. I've given up on that. I supposes I do my best to ask the oncologist questions in a positive manner. I also guess he doesn't need to hear how frightening and stressful this all seems right now. Even more so when he doesn't really seem to want to address that something could be wrong.

And from what he said, it sounded like they are planning on watching him for now and doing blood work next month and then the PET scan at the start of October. So I suppose I have to wait to calm my nerves until then!

If anyone can answer the question about rate of Teratoma growth that would be great.

Becki

[Scott]

Teratoma can grow quite slowly. It's essentially normal cells growing where they don't belong, but the growth can crowd out what does belong there or become malignant.

I know that the RPLND surgery seems scary, but if it turns out that your husband needs it, he absolutely can get through it. Hang in there.

[Fed]

Teratoma can grow quite slowly. It's essentially normal cells growing where they don't belong, but the growth can crowd out what does belong there or become malignant.

Scott is absolutely right. In fact, the major issue with teratoma (apart from it not responding to chemo) is that the less mature it is, the more likely it is to turn into a cancer that is much nastier than the original germ cell tumor. A teratoma can transform into an adenocarcinoma or a sarcoma, both of which are considerably harder to treat. In cases of suspected retroperitoneal teratomatous masses, an RPLND is a small price to pay to ensure a cure.

[mercyriver]

Thank you Scott and Fed. I did not really know that about the immature teratoma. And although we had Dr. Ulbright at IU doing a 2nd opinion on the pathology it never mentioned if it was mature or immature teratoma in the orginal tumor. I said something along the line of "another type of cell is commenly seen with the embryonal carcinoma and while contriversial it is presummed to be teratoma". This isn't the exact, but I know it is on this board somewhere and I have the paper, it is just pack in a box (we are moving in 2 weeks). The "while contraversial" part always confused me.

But I guess now that you have stated what you have, that is what concerns me. Our slow oncologist. We won't have another look at this until October and then, if it doesn't light up on the PET scan they will just wave it off as overly large lymph nodes, until they get to big.

I know that may not be compleatly accurate, but it is what my frustration is feeling right now.

But hey, I guess that is why I am here, to keep pushing in the right direction, no matter how much it upsets my husband! That is what wives are for.

Thanks again guys.

Becki

[mercyriver]

I found the pathology report

I posted back in Dec.

"Testis, right, radical orchiectomy:
Mixed germ cell tumor (embryonal carcinoma-70%;teratoma-20%;yolk sac tumor-10%), with lymphovascular space invasion; no extra-testicular extension identified.
Maximum tumor dimension by gross examination, 3.0cm.
Spermatic cord negative.

Pathologic Stage: T2, NX, MX



Microscopic Description:
In our opinion, this right testicular tumor represents a mixed germ cell tumor. The predominat element is embryonal carcinoma, and this is arranged in mostly papillary and glandular configurations. These tumor cells have the characteristic pleomorphic appearance with crowded, overlapping nuclei. Additionally, we feel that there is a neoplastic stromal component often seen paralleling the embryonal carcinomatous cells. While it is controversial, in our opinion, this component should be regarded as teratoma. Additionally, there are myxoid foci that contain stellate cells and occasional glands and this, in our opinion, represents yolk sac tumor. The tubules peripheral to the tumor show intratubular germ cell neoplasia of the unclassified type. There is lymphovascular space invasion by tumor; we do not identify extra-testicular extension in these sections. The spermatic cord sections are negative for tumor."

[boyce]

Rplnd

I had the RPLND (post-chemo) in November 06. Personally, I found it much easier than the chemo. Sore for a couple of weeks, in the hospital for 6 days, but felt better each and every day (unlike chemo).

Becki, we are all praying for te same esults as you are, but if the worst is heard and the RPLND is necessary, it is not as bad as your husband's mind is telling him it is. Please give him a hug from all of us here, and tell him that while the RPLND is a big procedure, it is very doable and recovery is not bad.


I hope he never finds out, but we're here to support both of you regardless!

[mercyriver]

Thanks Boyce for your encouragment!

Becki

[mercyriver]

Update

My husband had his appoint with his Onc today. The 2 same lymph nodes were enlarged. But really not enough to make a sound judgment. I don't have the exact measurments, because I haven't gotten my copy of the CT results, yet. But I'll take my best stab at remembering. In June one was 1.9x.9 and is now 2.1 x 1.2 and the other was 1.2 x 1.0 and is now 1.1 x 1.2. I think. Also he AFP was up from 2 something to 3.3, nothing major...just up a little.

So they will go with surveillance for now. They will do the PET/CT at the start of Oct. He will also do blood work next month. But that was about it.

My husband refused to discuss getting his testosterone check, regardless of his continued fatiuge and his weight gain, about 10 pounds in 5 months, and he isn't eating any differntly then before.

Good news is he is planning on joining an indoor soccer league. So he should start dropping some pounds.

My husband also said if come Oct the nodes have increased in size any more, at all, he will be asking for the RPLND. He doesn't want it, but he doesn't want this to go any further. So that was good to hear.

So, I am off to try my best not to worry for the next two months! It is a goo thing school is starting up and we are moving, it will give me something else to think about!

Wish me luck.

Becki

[Margaret]

Best of luck Becki. Sounds like things are still going well, although I can sense your frustration in wanting him to get his levels checked.

Thinking of you!